Palliative care research at Subiaco

Our research project is comparing the current standard-of-care Not-for-Resuscitation (NFR) form with the soon to be introduced Goals-of-Care (GOC) form.

We predict the new GOC form will lead to an improvement in patient/family and staff communication regarding appropriate treatment goals during critical events in hospital. We also hypothesize this improved communication will come at the expense of an increased workload.
  • The current system for documenting limitations in therapy or end of life planning is the NFR form. Presently, the NFR form is completed in an ad-hoc manor with no guidelines as to when, how or who should complete the form. This is further complicated by the nature of the NFR form that places patients on a pathway of either full resuscitation or palliative care when other viable clinical pathways exist.
  • Although advance care planning (ACP) and the advance health directive (AHD) introduced in 2010 have increased patient awareness, research has shown patients who enter hospitals for any reason, often (less than 97 per cent) do not make their wishes known to professional caregivers. Research also shows that patients prefer their doctors to initiate discussions about prognosis and realistic outcomes of treatments. In the absence of a documented ACP/AHD, hospital staff currently rely on whether or not an NFR form has been completed outlining what discussions have occurred and the agreed treatment plan should a critical deterioration occur. At present at St John of God Hospital Subiaco less than 15 per cent of medical/oncology patients and about 70 per cent of patients who die in hospital have their ceiling-of-care documented clearly and accurately.
  • The Department of Health WA aims to introduce the GOC form across public health services over the coming months without plans to thoroughly research its impact on patients or staff.
  • Quantitative outcomes: retrospective analysis and case notes review of NFR and GOC form completion rate, timing of completion, time taken to complete, evidence of communication, ICU admissions and deaths.
  • Qualitative outcomes: surveys and focus group discussions about the communication and role of NFR and GOC forms in limitation-of therapy and end-of-life discussions involving patients, family and clinical staff. 
Dr David Morgan 
Dr Derek Eng
Dr Dominic Higgs
Assoc Prof. Caroline Bulsara  

Bridge D, Yaakup H, McArdle N, Eng D; Withdrawal of Non-Invasive Ventilation in Palliative Care Patients.  Manuscript pending acceptance.

Bulsara C, Khong L, Hill KD, Hill A-M. (2016) Investigating community perspectives on falls prevention information seeking and delivery: Older person perspectives regarding falls prevention education using a world café approach. Journal of Community Psychology. 44:7. 937-944.  

Hutchinson K, Roberts C, Daly M, Bulsara C, Kurrle S (2015) Empowerment of young people who have a parent living with dementia: a social model perspective. International Journal of Psychogeriatrics.

Martin E, Bulsara C, Hands B, Naumann F. (2015) Breast and Prostate Cancer Survivor Response to Group Exercise and Supportive Group Psychotherapy. Journal of Psychosocial Oncology. DOI:10.1080/07347332.2015.1082166.

Blackburn P, McGrath P, Bulsara C. (2015) looking through the lens of receptivity and its role in bereavement support: A review of the literature. American Journal of Hospice and Palliative Care. DOI: 10.1177/1049909115595608.

Bulsara, C & Styles, I. Development of a Cancer Related Patient Empowerment Scale Using the Polytomous Rasch Measurement Model. Cancer and Clinical Oncology 2013. Vol. 2(1).